We need health databases like we have for organ donors


The practice of medicine often involves making the best of a tragic situation, learning from illness to help people stay healthy. Look no further than the act of organ donation. The selfless act of the donor can turn loss into hope for the sickest patients, those most in need of an organ transplant through the United Network for Organ Sharing (UNOS), the nation’s transplant system. Each organ donor has the potential to save up to eight lives and improve the quality of life of 75 others. So many of us check the organ donor box on our driver’s license, often without thinking too much about it. One of the great paradoxes of medicine is that the end of one life can give others the chance to live. When we think of the benefits of a breakthrough therapy or the clinical impact of an individual life, it’s always a one-to-many story.

I’ve spent most of the last decade building a team dedicated to advancing precision medicine through data and technology, which itself is a one-to-many model. As the industry as a whole has made immense strides in harnessing data to inform medical research and point-of-care decisions, we have understood: why should data be treated any differently than organs? ?

When data from various sources, including electronic health records, pathology slide imaging and radiology scans, and genomic sequencing results, are combined and anonymized across the health system, we can make significantly advance therapeutic discovery and development and find better treatment options. . This longitudinal view of the current cancer landscape, of what works and what doesn’t, can help researchers identify gaps where new treatments are most needed. Think of it as a system like UNOS, but for data. Real-world evidence is applied to guide the treatment of other patients more accurately and effectively. Applying the lens of data to health care, it is fair to say that the history of medicine is the progressive application of knowledge to biology. In our time, patient data has become the most sophisticated expression of applicable knowledge. So what can we do to make it a many-to-many model?

Ten years ago, if a patient responded well to a new therapy, that was the limit of the information learned. The doctor couldn’t be sure that the next patient to walk through the door would experience the same thing. But now, with data-driven insights, made possible by the use of artificial intelligence that allows researchers to quickly interpret large amounts of clinical information into unique insights, there is so much more to inform treatment choices and decisions. Links can be drawn from these data that could explain some positive patient outcomes, whether specific tumor biomarkers or hereditary signals. The more anonymized patient data that can be collected, organized and harmonized, the greater the chance of finding the next breakthrough in care and, potentially, the difference between life and death for future patients.

Like organs, health data is powerful. When properly secured and anonymized in accordance with applicable laws and regulations, as is the case for organ donation, data can enable physicians and researchers to learn from the experiences of patients today. today to help those of tomorrow. We already see it applied successfully every day, when doctors use data to personalize the care of each of their patients by identifying promising targeted therapies and clinical trials.

So how do you get there? As UNOS reports, organ transplants were only run entirely by individual hospitals until the 1970s; however, that’s still where we are with data, which is managed at the individual health system level, with little infrastructure to enable sharing of anonymized data nationwide. We can only make better use of data if it is harmonized across the industry and inclusive of all patient populations. We need to remove technological barriers (eg, interoperability, data standardization), share data between hospitals and healthcare facilities, and work together to create insights that will help generations of patients.

Health data can create as much value as organ donation, especially in oncology. But, while a cancer diagnosis is always devastating, perhaps we can advance care with insights from collective anonymized patient data to turn those experiences into hope.

Eric Lefkofsky is the founder and CEO of Tempus.


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